Health
As mentioned in an earlier post, Liam was very uncomfortable last weekend.  It went from moaning to yelling to screaming.  She got no sleep.  From that conditioned in flipped a 180 degrees to where she became quite, sleepy, lethargic.
It's the worst when she's non-responsive.  Beside the elementary question marks - if something hurts, if she's comfortable, etc - there are the more "personal" questions:  are too hot or too cold, do you like this program on TV or that program, do you want us in the room or out of here, etc.  There are no answers.
Late yesterday Rachel took a few samples to the lab and a UTI was diagnosed - AGAIN!  This explains a lot.  But, the road is still long and uncertain.  First of all they need to find the antibiotics that work for her.  As Christmas is approaching, it's difficult to put all the pieces together - the Dr, the lab, urology department, etc.
A month ago we would have admitted her to the hospital.  Now though, we have a bunch of medical devices here that we can monitor her and know that she's not in critical condition.  This assessment can change, of course, any minute.

Health Plan #1
Yesterday was the first day we used the service of a home nurse.  This is something new Rachel arranged for in order to take the tremendous pressure off herself.  This is still a work in progress.

Health Plan #2
HOORAY for congress (or whoever) for passing a bill for the health care.  I'm not looking at it as a political issue, right-left, but as a personal issue.  Such a bill (or what it will eventually evolve into) will help with Liam's care for the long run.  Coming January we will be on a new insurance.  Every time we switch providers it a new war for Rachel.  It takes months if not years until they learn about Liam's situation and agree to participate in paying the astronomical bills.  A healthcare bill with the focus on HEALTH (rather than money) might insure that she will always be covered.
I grew up under a social system.  When I was 22 I was seriously injured.  It took me four years, 5-10 surgeries, and hundreds of physical therapies to get out of it (and I never completely recovered...still carrying with me some of the injuries still).  The cost to me:  $0.  I have an experience with both systems now.  I'm convinced that the perfect solution is neither system, but a hybrid of both.  I see the bill passed this week as only the first step in a long process - but an extremely important one.
(As a reminder, this is not a political discussion platform.  It is MY blog.)